Facebook Live with Cynthia Toussaint and John Garrett | CRPS, Cancer, and Caregiving

Cynthia Toussaint serves as Spokesperson at For Grace and has had Complex Regional Pain Syndrome for 40 years. She later developed Fibromylagia and other over-lapping, auto-immune conditions. Her most recent diagnosis is Triple Negative Breast Cancer which she is currently battling.
Cynthia founded For Grace in 2002 to raise awareness about CRPS and five years later expanded the organization’s mission to include all women in pain. Before becoming ill, she was an accomplished ballerina and worked professionally as a dancer, actor and singer.
Since 1997, she has been a leading advocate for women in pain, raising awareness through local, national and worldwide media as well as public speaking. Toussaint championed and gave key testimony at two California Senate informational hearings. The first, in May 2001, was dedicated to CRPS awareness. The second took place in February 2004 and explored the chronic under treatment of and gender bias toward women in pain. Both of these efforts were the first of their kind in the nation.
In 2006, Toussaint ran for the California State Assembly to bring attention to her CRPS Education Bill that Governor Schwarzenegger vetoed after she got it to his desk in its first year. Her next bill, a seven year effort, was signed into law by Governor Jerry Brown in 2015. This Step Therapy legislation reformed an unethical prescription practice used by the health insurance industry to save money in a way that increased the suffering of California pain patients.
Toussaint was the first CRPS sufferer to be featured in the New York Times, Los Angeles Times and on the Public Broadcasting System and National Public Radio. She is a consultant for The Discovery Channel, ABC News, FOX News, the National Pain Report and PainPathways, the official magazine of the World Institute of Pain. Also, she is a guide and guest contributor for Maria Shriver’s Architects of Change website.
Her many speaking engagements include the National Institutes of Health, Capitol Hill and the World Health Organization.
Toussaint is the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. Also, Toussaint is experiencing her first-ever partial CRPS remission largely due to the narrative therapy of writing this book.
She continues to be a leading advocate for health care reform in California. She was instrumental in changing public opinion which sparked sweeping HMO reform legislation that was signed by Governor Gray Davis in 1999. Her focus has now shifted to creating a single-payer, universal health care plan in California that would provide a model for the rest of the country.
In 2019, Toussaint was diagnosed with Triple-Negative Breast Cancer caused by CRPS and familial trauma. She beat it in 2020, and is currenting fighting an aggressive recurrence using whole-body, integrative care. Her work is now strongly reflecting her passion for the pain-cancer connection and Post-Traumatic Growth.
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John Garrett serves as Director at For Grace and was instrumental in launching the organization in April 2002 along with his partner Cynthia Toussaint, who has suffered with CRPS (and over-lapping auto-immune conditions) for 39 years. Garrett has been partner and caregiver to Toussaint for 41 years. He has done extensive research about the gender disparity toward women in pain, compiling a comprehensive library on that issue along with specific chronic pain conditions.
Garrett has assisted Toussaint in all aspects of media relations and advocacy regarding CRPS awareness and the pain gender divide. His work focuses on speech presentation, grant writing, research, media outreach and the development of branding strategies. Garrett has also advised California’s Department of Managed Health Care and other state agencies regarding pain management practices in the HMO industry.
Commenting on her long-term partnership with Garrett, Toussaint said, “My story as a woman in pain is also a love story because John’s support has been total and unwavering. Without his loving presence in my life, I wouldn’t be here.”
Garrett made numerous writing contributions, reflecting on his role as a caregiver, trauma survivor, witness and partner, in Toussaint’s memoir, Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. Also, Garrett continues to make public speaking and media appearances that share the virtues and challenges of the caregiving experience.
To learn more about complex regional pain syndrome (CRPS) and reflex sympathetic dystrophy (RSD), visit Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)’s website at rsds.org.
#RSDSA #CRPS #RSD

[@nancyboal3581]

My RSD doc taught me to do my own block. It has been a God send.. it is a Sphnoid ganglion block using a long 1 sided cutip and 4% liquid lidocaine. I go down the sinus cavity and let the lidocaine rest on a nerve bundle. The doc wasn’t sure how far it covers on the body, but I am treating my toes and it’s helping. So it seems it helps the whole body. The great thing about it is as soon as a body part ‘flares’, I can get right in it! Morning and night. I can feel the nervous system kicking up a storm. The block makes the kicking less and less till I am ok again. I can also tell if I am inflamed as the passage way feels smaller. So I know to take an anti inflammatory. Hope this info helps!

[@AmethystWoman]

Easy for people without trauma to tell us to get over it. I'm 68. Got CRPS when I was 24. That's a lot of life gone. Very few friends even know I live with pain.

[@AmethystWoman]

Sister 40 years later "You still have that"? I don't know anyone IRL with CRPS. And have never seen anyone who has lived with CRPS for 40+ years. (1979)

[@dorenehendricks6627]

RSD sucks 20 years every day is a struggle lose of muscle and lifting a 1/2 milk weights a ton but life goes on

[@AmethystWoman]

I had covid and massive covid spread before their WAS a vaccine. As far a vaccine goes, if you think vaccine caused issues, having the inflammation of covid itself is worse.

[@butterflybeatles]

Each word of CRPS is meaningless -- except for Pain.

[@nancyboal3581]

Pain, as I am sure you know, is something is wrong. It is a neuro disorder. You should be able to get the pain settled.. with the right treatment….. hence the name reflex sympathetic dystrophy. I know, the medical industrial complex changed the name for filing insurance. But in my world, it is still RSD, as that says what it is.